Re: new to group

September 7, 2003

Hi Judy,

I had a nice phone conversation with Doug last week. Hopefully, you

received my e-mail with the references to read about PLS. I'm glad to see

that he took my advice about joining PLS-Friends. As

I told him when we spoke, the group members are a wonderful source of

information and support.

Don't forget to call or e-mail NORD to get a free copy of the Physician's

Guide to Primary Lateral Sclerosis. You'll learn a lot from it. Don't be

dissuaded because it's call " physician's guide " , because it is very

understandable for non-physicians.

Did you receive my e-mail telling you about myself? I sent it in a separate

posting.

Dolores

new to group

> Hi! My husband, Doug (age 56) and I, Judy, have had much difficulty

> finding any info about PLS. Doug has been afflicted for about 13

> years, but only recently ended up with PLS diagnosis.

November 5, 2009

Hi Dave:

Hang in there. There's no need to panic, and there's no need to rush into

any decisions. You are and should be in an information gathering and a

learning mode. On this list, you will find a lot of knowledgeable folks

with a wealth of good information and advice. Heed their advice.

When you go to the Doc tomorrow, make sure you take a list of questions with

you. None of your questions will be silly. If possible, have someone (a

significant other, spouse, best friend) go with you. At these times, two

heads are better than one. Be sure you get copies of all lab reports,

radiologist reports, etc. You need to take charge of your situation.

When you leave the Doc's tomorrow, you should know the following

information, at a minimum: What was my PSA history? How did they diagnose

the cancer? What did the biopsy show? What was the Gleason score of the

biopsy? What information did the radiology disclose? What is the estimated

stage of my cancer?

There are other folks on this list much more knowledgeable than I who will

have additional, very constructive suggestions for you.

You'll be remembered in my prayers tonight. Again - hang in there!

Coy

, Michigan, USA

new to group

> I am 58 years old and was diagnosed with prostate cancer on Sept 30th.

> On Oct 2, I went back and had a bone scan and cat scan on the same day.

> It was didcovered that my bladder was very full so in order to complete

> the bone scan I had to have a catheter put in, which was very traumatic

> for me. Then I had an allergic reation to the contrast they gave me when I

> had the cat scan. I spent the night in the hospital. Since then I have

> been on edge, can't sleep for any lengthy amount of time and suffer from

> continual pain from the catheter. On the 20th of October I had a biopsy

> and go tomorrow to find out the results as to how far it has spread. I am

> not very optimistic and am scared of what they will tell me.

> Please say a few prayers for me, I will need all the help I can get.

> By the way, I am being treated at the V.A Hospital. Anyone else have

> experience in being treated by VA for prostate cancer?

>

> ------------------------------------

>

> There are just two rules for this group

> 1 No Spam

> 2 Be kind to others

>

> Please recognise that Prostate Cancerhas different guises and needs

> different levels of treatment and in some cases no treatment at all. Some

> men even with all options offered chose radical options that you would not

> choose. We only ask that people be informed before choice is made, we

> cannot and should not tell other members what to do, other than look at

> other options.

>

> Try to delete old material that is no longer applying when clicking reply

> Try to change the title if the content requires it

November 5, 2009

Dave wrote:

> I am 58 years old and was diagnosed with prostate cancer on

> Sept 30th. On Oct 2, I went back and had a bone scan and cat

> scan on the same day. It was didcovered that my bladder was

> very full so in order to complete the bone scan I had to have a

> catheter put in, which was very traumatic for me. Then I had an

> allergic reation to the contrast they gave me when I had the

> cat scan. I spent the night in the hospital. Since then I have

> been on edge, can't sleep for any lengthy amount of time and

> suffer from continual pain from the catheter. On the 20th of

> October I had a biopsy and go tomorrow to find out the results

> as to how far it has spread. I am not very optimistic and am

> scared of what they will tell me.

You've certainly been through the mill Dave.

Can you tell us what the indications were that led to your

diagnosis? Usually a definitive diagnosis is only made after the

biopsy.

What was your PSA? Did the bone scan or cat scan reveal anything

or are you still waiting for the results of those tests?

Is this a second biopsy? If so, what was the result of the

first one? Did they give you a Gleason score?

> Please say a few prayers for me, I will need all the help I can

> get.

We will all be thinking of you, rooting for you and praying for

you.

> By the way, I am being treated at the V.A Hospital. Anyone else

> have experience in being treated by VA for prostate cancer?

I have not been treated by the VA, but I know several men in the

Internet newsgroup alt.support.cancer.prostate (ascp) who have

been. They have had mixed treatment ranging from excellent to

atrociously bad. I guess a lot depends on the particular doctors

and the particular hospital you are using. If you want to

inquire in ascp, you can point your news reader to that group.

If you have never used a news reader and don't know how, you can

also access the group from Google. Go to:

http://groups.google.com

and follow the directions to create an account.

At this point, a great deal depends on the results of your tests.

Depending on the results, you may be told that your cancer is

potentially curable with surgery or radiation, or that it is not.

If it is not, then there are drugs they can give you that will

" regress " the cancer, killing off a lot of it and holding it down

for some period of time. How long that will be depends on the

amount and aggressiveness of the cancer and the reaction of your

particular cancer to the drugs. Some cases are highly sensitive

to the drugs and a patient may live 15 or more years on them,

while others are not very sensitive to the drugs and only get a

year or so before the cancer starts to progress again.

New treatments are being developed and more and better drugs may

be available in the next few years.

I think it is important to educate yourself as much as you can

about the disease. The more you know, the better prepared you'll

be to understand what the doctors tell you, to ask intelligent

questions, to choose among any options they give you, and to

determine whether your doctors are good ones or whether you need

to try to make a change.

There are some excellent websites that are chock full of

information. I think one of the best is:

http://www.yananow.net

Click the " DON'T PANIC!! " button and continue from there.

Another good one is:

http://www.prostate-cancer.org

Click the " Newly Diagnosed " button for a good introduction.

There is also a ton of authoritative information available from

the U.S. National Cancer Institute at:

http://www.cancer.gov

Your life has definitely changed, but you're almost certainly not

going to die of prostate cancer very soon, and it's very possible

that you won't die of it at all. About 230,000 men were

diagnosed in the U.S. last year, but only about 30,000 died of

the disease. Unless your case is very aggressive, the odds are

in your favor.

We wish you the best of luck and don't hesitate to ask more

questions here.

Alan

November 6, 2009

Hi Dave.

If you served in Viet Nam there are special benefits available to those

exposed to Agent Orange. Go to this web site for all the info. Some are

getting 100%.

" Il faut d'abord durer " Hemingway